Home once again

Just a very quick update to say that Abigail has been discharged and arrived home at lunchtime today along with a vast range of milks and medicines. She remains on a naso-gastric tube for feeding and we have been taught how to use this properly – we will also be attempting to reintroduce oral feeds in the coming days and weeks. Doctors feel that Abby has improved markedly in terms of her severe fitting and that she is now well enough to be cared for at home. The other brief news is that a conclusive eye test will be performed in the next few days at King’s in London, and also that Abby’s anti-convulsant drug levels have been increased once more. Today is a good day although it’s clearly the start of a long road ahead. I’ll send a fuller update soon.

More settled but worry over vomiting

Last week Abigail’s condition seemed to be quite changeable and it was difficult to pinpoint any trend in her condition. As you may recall from my previous update of the 14th, Abigail had some major epileptic episodes last Friday and she had another bad day last Saturday too. She had to have more Lorazapam injections, which offer a strong and immediate anti-convulsive treatment as well as her regular Phenitoin and Phenobarbitone drugs. Her oxygen saturations were also dropping occasionally and Abby did have to have oxygen gently administered to bring her sats back up.

Since last Saturday evening, though, Abby seems to have been much more settled. Since then and during this week she has only had minor twitching and episodes that appear to have resolved themselves in a matter of seconds rather than minutes. Doctors have decided not to administer oxygen in the event of these minor fits as her saturation levels seem to correct themselves fairly quickly. Abigail has also not had to have the stronger Lorazapam drug offered at all since last Saturday evening.

Nix has been able to cuddle and hold Abby much more this week and she has certainly seemed more settled. There also seems to be some possible signs of better eye movement, with Abigail appearing to ‘lock on’ to faces momentarily – something she has not done up to this point. We are still unsure of what (if anything) she can see.

Despite a good few days, there remain some short term concerns. Abigail is still vomiting her feeds up from time to time. Although she is putting on weight well at the moment, this is obviously a concern given that her drugs are now given orally. Also, Abby’s drug levels are being monitored in liaison with an epilepsy specialist from Guy’s hospital in London. She is currently recommending an arbitrary drug level of 22 in Abby’s blood. Despite several increases in her dosage, blood tests this week have revealed a level of just 1. This is both good and bad news. On the good side, it means that there is still plenty of scope and ‘headroom’ in her drug levels should the fits remain difficult to control. On the bad side, it means that Abby is likely to spend some more time in hospital whilst these levels are corrected and monitored closely. Anti-convulsant drugs ‘metabolise’ in the body very rapidly so large amounts have to be given initially and then smaller doses are needed to keep the level up.

As far as the medical staff are concerned, none of this changes Abigail’s long term prognosis which remains very bleak. But for us, this week has been a better week and we’re hoping that it continues into a real trend of improvement in the treatment of her fitting. Once that is under more control we may be able to begin oral feeding again and have the prospect of bringing her home once more. Abby is likely to remain in hospital for another few weeks yet.

Medication changes have no real effect

Apologies that it’s over a week since our last update on Abigail’s condition – life has been very hectic and much of our time has been taken up with visiting Abby in hospital. Last week was particularly difficult with Abigail’s fitting seeming to worsen and drugs having little effect, and that really continued into last weekend too. On Saturday we saw another of the consultants who said he'd decided to review Abby’s main drug level on the Monday with a view to increasing the dose if blood tests showed that her tolerance could be extended. Unfortunately, the level and severity of her fitting in the meantime meant the decision was taken a day earlier on Sunday (9th) and the drugs were increased significantly.

In a change from our expectations and assumptions of last week, the consultant also commented he felt that there was no immediate danger on Abby’s life in the short term. He even went as far as to say that she had almost “about as much chance of dying in the next few weeks and months as you or I.” This news has been difficult to digest because it has been made quite clear to us that Abby will in all probability have a very low quality of life. In addition to severe cerebral palsy, she is expected to have severe mental and physical handicaps affecting speech, movement and intellect. We are still concerned about her sight and the consultant on Saturday said he expected her to be unable to walk, talk or feed herself. In short, she will almost certainly be completely dependent on us.

It is horrific to think of your own child in these terms, but it’s incredibly difficult to imagine life for Abby under these circumstances for any great length of time and we had begun to wonder whether she might be spared a long life like that. As doctors have already said though, it is notoriously difficult to predict these conditions in young babies and so we feel that we must press on and expect the bleak prognosis that has been given. Some better news this week was that Abby was weighed on Monday and is now 9lb 12oz – nearly three pounds up from her birthweight and looking much bigger with it!

At the beginning of this week, Abby’s consultant held some more discussions with a specialist neuro and epilepsy consultant at Guy’s hospital in London. She made some suggestions as to medication levels and combinations of drugs that could be tried. These were put into effect and this week has seen what appears to be some improvement in the control of Abigail’s fitting. In the last few days she has seemed much more relaxed and has been having less major episodes. To this end, Nix and I have been able to hold her much more and have bathed her a few times without much epileptic reaction – something that we couldn’t have done last week.

As I write this, Nix has just returned from the hospital tonight (Friday 14th) and has said that Abby has actually had some more major episodes again today and that her oxygen saturations have dropped from time to time too. She has even had to have oxygen administered by mask occasionally.

As you can gather, events seem to change constantly and it’s difficult to see any trends in Abby’s condition over more than a few days. Her consultant did chat to us both yesterday and confirmed again that it may not now be possible to ever fully control all the fits, but that they were still confident they could be brought under much more control that is currently the case. There also seems to be quite a range of drugs still available to try should the current cocktail not prove as effective as hoped. Doctors have said they expect Abigail to remain in hospital for another week (possibly two) whilst her medication levels are honed and adjusted.

Outlook bleak with more fitting

I’m afraid that once again the latest news about Abigail is not good. A week after Abby was re-admitted to hospital following a routine consultant appointment, the prognosis for her is if anything more bleak than before. Over last weekend Abby seemed to be fitting more and more and despite the fact that she was back on a general anti-convulsant drug, she also had to have several courses of an immediate anti-convulsant administered by injection during some episodes. The vast majority of Abigail’s feeds are now by naso-gastric tube again, although the occasional one has been managed orally.

On Tuesday Abby was taken up to King’s College Hospital in London once again for an EEG brain scan that would determine that specific area of the brain that was fitting and therefore be a guide to what medication might more readily bring the episodes under control. We got the results of that EEG today (Thursday) and Abigail’s consultant has also liaised with an neurological consultant from Guy’s Hospital in London about possible courses of action concerning her medication levels.

Nix and I have been very low this last week as we’ve watched Abby helpless and in a lot of distress through her frequent fitting episodes. The better news is that doctors feel although Abby’s fitting is more of a challenge than first envisaged, they do think they'll eventually get her medication right so that her episodes are much more under control. The bad news is that with Abby now over seven weeks old and showing few signs of making much ‘normal’ developmental progress, the outlook for her seems to be getting bleaker.

The EEG results showed that in addition to her outward fits, she is experiencing many sub-clinical fits which do not manifest themselves externally at all. The upshot of this is that Abigail is fitting pretty much all the time. Although her fits are not causing more brain damage, they are now seriously impeding her child development and doctors feel that not only might she be heavily delayed in reaching her ‘milestones’, she may well never reach some of them at all. Her sight is a particular worry and we do fear that she is not seeing properly at the moment, if at all.

Finally, we did ask Abigail’s consultant about the prognosis on her life as a result of all this. She said that although doctors are not overly concerned for her at this stage, the outlook for Abby is not very good and notoriously difficult to predict with any certainty. She said that she had seen children with similar problems to Abigail who had not made it to their first birthday and others who were in their twenties, but that it was certain that she would not live to ‘normal’ old age. This is more attributable to her fitting (probable epilepsy) than to cerebral palsy or any specific mental deficiency.

As you can imagine this has been incredibly difficult news to digest and we really do feel very low indeed. We feel torturously torn between wanting our daughter to live and experience life and all that it (and we) can offer her, and the awful thought of not wanting her to suffer as she so clearly is at the moment. We are hoping that the doctors can alleviate at least some of the burden of these energy-sapping fits very soon. We’re also having to face telling our other two children, Rebekah (4) and Joshua (2) much more about the seriousness of Abigail’s condition than we previously wanted to.

More seizures in hospital

As you will know, Abigail was re-admitted to Queen Elizabeth Hospital in Woolwich on Thursday after a routine consultant clinic appointment brought fears that Abby was fitting again. Since then, she has been in a high-dependency room on the children's ward and is back on an oxygen saturation and heart rate monitor. She was also put straight on to a course of anti-convulsant medication – you may remember that her drugs had originally been stopped a week or so before her discharge. This time she was put on a different drug to try and stabilise the fitting she is experiencing. Doctors also planned to carry out another EEG brain scan at King’s College Hospital.

Since Thursday the news has not been good. Abby is definitely fitting quite regularly and her saturation levels have been dropping such that she has had to be given oxygen at least once. The new drug that doctors have put Abigail on doesn’t seem to be controlling the fitting and there is the possibility that she will have to be prescribed a different drug again in order to control it. One fit last night was severe enough to warrant an immediate dose of a stronger one-off anti-convulsant. Since the medication has made Abby so sleepy again, her feeding has not been going well and she is back on a naso-gastric tube for her milk. This is a big setback after Nix had struggled for so long to get Abby onto normal bottles and teats.

Doctors still don't have a date for an EEG scan but will chase King’s for a date on Monday. When Abigail was admitted on Thursday her consultant originally said she expected her to be in until this coming Monday (3rd) but that’s looking very unlikely now. The shock off having Abigail back in hospital and the pressure that brings with visiting and managing home life is now far worse than it ever was before we brought her home. Rebekah and Joshua are asking where Abby is and have become very clingy again.

To be honest, Nix and I are not coping at all well with this major setback. For the first month or so of Abby’s life we were told to take each day one at a time. Right now we just have to take each hour one at a time in terms of our ability to see beyond the horizon.